By Cort Johnson
Unrest is about to spring into action. Scheduled to go into widespread theatrical release in dozens of theaters over the next couple of months on Sept 22nd in the U.S. and Oct in the U.K., Unrest is about to really make its mark.
Changing Hearts and Minds: A Review of Unrest by WaitingDisclaimer: as a PWME, I have to include a disclaimer that I may not have remembered the details precisely – it has, after all, been 2 days since I saw it (!).The documentary is a success! By that, I mean that I, as an ME/CFS patient of more than a decade, and an advocate for erasing the stigma of this disease, believe Unrest will change hearts and minds. Should the general, healthy public see the film, I believe it will do just that.The persuasion begins with the film's poster. It is a fashion magazine cover-worthy photo of Jen, startling in both her youthful beauty and the incongruity of electrodes glued to her head. The attached multi-coloured wires look almost pretty as they cascade down her flowing hair (the photo presumably depicts her being prepared for an MRI). (Ironically, in the film we learn an early MRI leads to a ridiculous (mis)diagnosis of "conversion disorder" from the first neurologist she saw.)It's a startling image, which combined with the doc’s title “Unrest”, is perfect for its subject matter and compelling.The film itself is similarly raw. It opens in darkness with the sounds of someone breathing unevenly. It's Jen, lying flat out on the floor, struggling to get up. She's either in a PEM-induced crash or perhaps she's in the "acute phase" of her disease when any movement could be torturous. She sobs, in frustration and pain.Jen was down, really down, but it's hard to picture her as being helpless. The precious energy and years spent making this documentary put her health at considerable risk. She had tremendous help from her husband, friends, other ME patients, advocates and professionals, but it was surely her optimistic personality, her humanity and her intelligence that must have convinced all these people to work with her.The story is her story. Yes, she films ME specialists, fellow ME patients, family caregivers and shows medical politics in action but the film is primarily about how ME affects the daily life of her and her wonderful husband, Omar.Omar deserves a special mention as a spouse who has stuck by her side despite the devastating changes ME has wrought in both their lives. (Omar and Jen image from NoFilmSchool Interview.) Ironically, it's Omar who gently chides Jen for using her energy in ways that will induce post-exertional malaise – a crash – even as recognizes that these activities are simultaneously emotionally beneficial to her. That push-pull is the continual dilemma all PWME’s face.The FocusThe ME specialists Jen films put the science, the medical politics and the prognosis of this disease in up-to-date, relevant and concise terms. These segments are a crucial, anchoring part of the film, but they make brief appearances. The main focus is two-pronged: to elucidate the harsh reality and daily predicaments ME patients face and the obviously sexist treatment of the disease (historically, and now) by many in the medical profession, the media and the general public.The Patients and the CaregiversMost of the film is deeply personal as Jen courageously films the daily life of her and her husband, as they cry and attend protests together, bolster each other, and go on with their lives as best they can. Other patients make appearances as well. Some are as ill as Jen; some more so; some less so, making the point that this is a spectrum disease, as she states in the film.The caregivers do their best to make their patients as comfortable as possible. Jessica’s family, in an annual painful reminder of a young life passing by, presents her with cake & champers (UK slang for champagne) and sings her happy birthday, she lies in her bed. The smiles are realWhitney Dafoe’s father Dr. Ron Davis, mother Janet Dafoe, and sister Ashley Davis, are visibly and deeply concerned as they care for him, year after year. Whitney has a very severe case of ME, is parenterally fed and must remain in a dark, silent room. Dr. Davis, as the famous geneticist and a father of his severely ill son, has the weight of the world on his shoulders, but he has pushed forward searching for a treatment, starting the: “Open Medicine Foundation The End ME/CFS Project: Research into causes, treatment and cure of ME/CFS”We get to see medical politics in action during a dramatic meeting in Denmark concerning Karina Hansen, the young ME/CFS patient who was effectively imprisoned in a psychiatric ward for 3 years. After her emprisoner, the fantastically wrong-headed psychiatrist, Dr. Per Fink, presents his view of her case, Dr. Stig Gerdes, stands up at the podium and essentially calls Per Fink’s psychosomatic theory pure bunk. Things get personal when Gerdes is silenced by someone running the meeting whom he sharply rebukes using her first name. It is film gold. When Per Fink was speaking, I really, really had to restrain myself from throwing my popcorn at the screen. After all, the kernels only would have rained on the innocent filmgoers in the next row.*Sadly, I have only just learned an update to Karina Hansen’s story. She was again imprisoned in a psychiatric hospital, then released, and now still faces future imprisonment. In an outrageous move, in March 2017, the country’s medical system took the courageous Dr. Stig Gerdes’ medical license. The fight, however, is far from over. (See the Facebook page “Justice for Karina Hansen” for details).The TreatmentsThe circus-like atmosphere to some of the numerous remedies Jen tries, including hook-worm (!), prescription medications, supplements and mold-avoidance (including camping in the desert and sleeping in a backyard tent), simply underscores the desperation many patients feel. Apparently, Jen was helped by some of these treatments (in particular, the prescription drug Valcyte and mold-avoidance), but it is unclear to what extent. I’m guessing her decision not to make her treatment details/outcomes clear was a stylistic one not to inundate a broader (non-PWME) audience.Jen also films without judgement YouTube patient testimonials from those who say they were cured by x supplement, y diet or z behavioural program. This part of the film shows the chaos we exist within. Who has ME and who doesn’t? Which treatment holds the best promise for each of us???Go See It!I saw the 3rd and final showing of "Unrest" at Toronto's 2017 Hot Docs Canadian International Documentary Festival. I attended with a good friend who also has ME/CFS and we saw other friends there, all who also have the disease. I heard of some patients’ family members who attended. I hope the film also appealed to those untouched (so far) by the disease.Jen's "Unrest" is a naysayer-convincing, brutally honest self-portrait of a young woman with ME/CFS. If you have family and friends who are skeptical of the severity of the disease, this film will cure them of that. I have heard that the documentary will be made available to ME advocacy groups for future showings. If you are able, go see it.
Find an Unrest Showing
From Laemmle's Playhouse in the U.S. (Sept 29-Oct , to the IFC Center in Greenwich Village (Sept 22nd – 28th), to a free screening put on by the Bergen ME/CFS Support Group on Oct 15th, Unrest is playing across the country.
Use the film's spectacularly easy screening finder to find a showing near you and spread the word.
Host a Screening – You, too, can host a screening. Find out how here.
Jenny Spotila – Unrest: Movie Review
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.